My Annual with my Neurologist

This past week, we traveled to Seattle for my annual review with my neurologist there.  Or a couple of neurology people.  We also went for an annual inspection of the retinas of my eyes, which we wrote about before.

The eye research seemed to go as planned, but my data gets anonymized, and no one gets to look at it in the context of a single person.  I don't even get to see my own data.  Instead, maybe someday they'll produce some interesting results and publish them where I can read them.  But this is a multi-year study, and they're tracking a number of us over time.  The way I've seen these things go, I don't know if I'll ever see what came of it.

The meeting with my neurologist may have been pivotal.  While I meet with my neurologist at the University of Washington Brain Wellness Center at Harborview every year, they have not tested me since 2021.  The tests take at least 3 hours, and they are both grueling and expensive.  They have begun to skip years, because my results have been consistently pretty good.

This year, when they called to schedule, I said I didn't see why we needed to test again.  In fact, I said I didn't see why we even needed to meet again.  What are they going to find that would cause a change in my treatment?  The only thing they could add is treatment with Aduhelm or Leqembi, but I wouldn't be interested in either of those.

My neurology meeting began with a resident I'd never met before.  She was very nice and asked good questions.  Of course, I gave her a copy of Beating the Dementia Monster.  Then my regular neurologist came in, and we talked about my future with them.  They clearly wanted me to stick around, but we decided we should move from annual reviews to meeting every second year.  We'll only test if I become concerned that there has been a change.

I told them that I have a number of things I watch to monitor where I'm at.  Most importantly, I look for problems with my driving.  Like close calls with pedestrians.  That caused me to stop driving once before, but for the past several years, I've had no problems.

I also watch to see if I remember to lock my car door when I go into a store.  This was a big problem for me in 2019, but not now.  Also, if I park in a big parking garage or parking lot (like the garage at Harborview!), can I find my car again easily?  (Yes I can.)

Also, for more than 2 years, I've been participating in their Clinical Core Study.  Essentially, I take short memory tests every week.  I don't get a score, but it's easy for me to see how well or poorly I'm doing.

And then, there's using the Spanish language.  If you read Beating the Dementia Monster, you know that I began learning Spanish when I was 59.  (I'm now 74.).  I read from the Bible every day in Spanish, and I speak with friends in Ecuador and Mexico over the Internet a couple of times a week for practice.  The parts of the brain that deal with language are attacked directly by Alzheimer's disease, and I watch for any changes in my ability to converse in a foreign language.

So I have things to watch, and they tell me a lot.  Maybe not as much as their tests, but as much as I think I need to know.

They observed my gait, which has really gone down hill.  I mentioned before that a neurosurgeon diagnosed me with cerebellar dysfunction ataxia, and this is a separate disease from Alzheimer's disease.  He said I should expect my gait to continue to deteriorate, and they have no cure for the problem.  The neurologist also observed that, in my speech, my diction has deteriorated.  I said I had noticed that myself, although it has seemed to come and go as a problem all the way back to 2015.  (We wrote about this in Beating the Dementia Monster.)

So for now, things are really pretty good, at least with respect to my cognitive impairment.  They have pretty smart people there at the University of Washington Brain Wellness Center, and I know I can turn to them if things start to go bad again.